Tika's Life

Name:Mr. Tikaram Dhungana

Disability: Duchenne Muscular Dystrophy and Wheel Chair Bound

My childhood

I was born in a poor family in a remote village Salyan in Solukhumbu district (a gate way to Mt.Everest) in about 2034 B.S. There were seven members-father, mother, two brothers, two sisters and myself. I was the middle son. My parents were uneducated and had to live on the small income they made from working in other's farms. We could hardly sustain. When my parents died, then I was overlooked in the family. I was suffering from Duchenne Muscular Dystrophy (MD).

People in the village are uneducated and don't know about this disease. They used to torment me and curse me for my disease. I was deprived of all my fundamental rights- the right to education; right to play and learn, right to participate in social activities etc. I still remember the ordeals I had to go through in my childhood.

The children, affected by such disease, are not admitted to schools on account of their inability to control urine and shit. Though they are admitted to schools, they are hated in the classrooms and are not well cared either. This is the main reason why I was thwarted from getting education.

Needless to say, I have been suffering from this Duchenne Muscular Dystrophy since my childhood. I am giving the account of this disease below.

DEFINITION

Muscular dystrophy (MD) is the name for a group of disorders in which muscle size and strength gradually decrease over time. Nine different forms of the disorder have been discovered.

DESCRIPTION

The nine different forms of muscular dystrophy are usually distinguished by the part of the body they affect. They include the following:

•  Duchenne muscular dystrophy

•  Becker muscular dystrophy

•  Emery-Dreifuss muscular dystrophy

•  Limb-girdle muscular dystrophy

•  Facioscapulohumeral muscular dystrophy

•  Myotonic dystrophy

•  Oculopharyngeal muscular dystrophy

•  Distal muscular dystrophy

•  Congenital muscular dystrophy

  Duchenne Muscular Dystrophy (DMD).

DMD primarily affects young boys. It causes weakness in the muscles that gets worse over time. The problem usually begins in the legs and then spreads to muscles in other parts of the body. It is the severest form of MD. DMD occurs in about 1 out of every 3,500 male births. About 8,000 boys and young men in the United States have the disorder. A milder form of the disorder occurs in a very few females.

CAUSES

Wasting of muscle tissue causes all forms of muscular dystrophy. Muscle cells die, and muscles become weaker and unable to perform their normal functions. Researchers are still uncertain how this loss of muscle function takes place. They believe that cells may lose their ability to produce certain muscle proteins. Proteins are essential chemicals that occur in all cells and have many different functions. For example, they act as building blocks for cells and as enzymes. Enzymes are special kinds of proteins that control the rate at which chemical reactions take place in cells.

Researchers believe that some forms of MD occur because some muscle proteins are absent or present in smaller-than-average amounts. In such cases, muscle tissue becomes weak. Other muscle proteins may be needed to repair damage in muscle tissue. If those proteins are absent, muscles that are damaged cannot be repaired. In most cases, the connection between absent muscle proteins or reduced amounts of proteins and various forms of MD is simply not yet known.

SYMPTOMS

All forms of MD have one characteristic in common—muscular weakness. Other symptoms differ, however, depending on the type of MD involved.

DMD Symptoms

The first symptoms of DMD appear during preschool years. The disorder affects the legs first. A boy has trouble walking and maintaining balance. In most cases, he begins walking three to six months later than average. As his calf muscles begin to weaken, he may change the way he walks. He places his legs farther apart in order to maintain balance. Walking this way produces a waddling effect that is characteristic of DMD.

Contractures usually begin at about the age of five or six. They affect the calf muscles most severely, pulling the foot down and back. This forces a boy to walk on his tiptoes. Balance becomes more of a problem. As a result, falls and broken bones become common at this age. By the age of nine or ten, a boy with DMD might not be able to climb stairs or stand by himself. Most DMD patients have to use a wheelchair by the age of twelve.

FAULTY GENES AND MD

Sometimes faulty genes occur on the Y chromosome but not the X chromosome. Chromosomes are structures in cells that contain many genes. Women have two X chromosomes and no Y chromosomes. Men have one X chromosome and one Y chromosome. Faulty genes that occur in Y-chromosomes are only present in men. This explains why some forms of muscular dystrophy affect men only. Men inherit those faulty genes, but women do not.

Muscles in other parts of the body are also weakened. When muscles in the upper body are affected, scoliosis (see scoliosis entry), or curvature of the spine, may result. The most serious problem, however, affects the muscles of the diaphragm. The diaphragm provides the in-and-out force that allows a person to breathe and to cough. As the diaphragm weakens, breathing becomes more difficult and patients will have less energy and stamina. They also become more subject to infection because they cannot cough up infectious agents that get into their lungs. Young men with DMD can live into there twenties provided they have mechanical aids to help with their breathing and good respiratory (breathing system) hygiene.

About a third of the boys with DMD also have learning disorders. These disorders can include problems with learning by ear and trouble paying attention to some tasks. Specialized educational problems can help compensate for these disorders.

TREATMENT

There are currently no cures for any form of muscular dystrophy. A few drugs have been found that slow the progress of some forms of MD. For example, prednisone (pronounced PRED-nih-zone), a corticosteroid (pronounced kor-tih-ko-STIHR-oid), slows the progress of DMD. Generally speaking, however, drugs have a limited and uncertain value in the treatment of MD.

The primary goal of treatment programs for MD is to prevent complications. The major complications are decreased ability to move on one's own, contractures, scoliosis, heart defects, and respiratory problems.

  MY AIM

Though I am suffering from incurable disease DMD, I will do something worthy which will benefit the underprivileged group. I can't perform my daily activities without the support of other people. I can't go to toilet on my own. I thought that I would be good-for-nothing in the past. But I met a group of disabled and handicapped friends who have inspired me to live a meaningful life in spite of the disability. So, I have been making a film ‘ SITA ' to educate people and create public awareness against blind faiths, superstitions, untouchability, and other dead habits that still exist in the society. I am going to launch this film soon. I like reading newspapers and literary books.

Realizing the plights of the disabled and helpless people, I am strongly determined to help the disabled and helpless children/ people to get education, nutrition, proper health care and protection thinking that they may be enabled to lead a life of dignity in the society.

I feel really pleased to state that we are going to run MAINA PENNWOOD SAHARA GRIHA , at Jorpati-5, Kathmandu , in coordination with a highly committed disabled and helpless group of National Disabled and Helpless Upliftment Association (NDHUA). Maina Pennwood Sahara Griha is a non political, non profitable and non governmental organization which chiefly aims:

•  To provide free education to the disabled children whose body from the waist to the feet can't function and who are confined to the wheel chair.

•  To provide them free food, clothes, medicines and hostel facilities.

•  To protect there fundamental human rights.

•  To provide job oriented trainings to the adult disabled

•  To enable and empower them to improve their living standard

My APPEAL

No man knows what he can do until he tries. So, I don't let myself die until my heart stops. We, disabled people have also inherent potentials within us waiting to blossom. We don't need your sympathy but long for equal opportunities to discover and reach our potential. We have to show that we can also bring changes in the society. If we get equality for education and skills development, we can undoubtedly contribute to the welfare of the mankind and the country. But we need sound fund to run a hostel for the disabled children because we have only limited source.

Finally, I appeal to all the people, donors, NGOs and INGOS for your emulative suggestions, encouragement or financial support to the welfare of underprivileged and disabled people. I do believe, your small aid can help them get education. Your small aids mean a lot . Please visit our website www.disabilityhelpless.org.np or e-mail us at info@disabilityhelpless.org.np, or ndhuadisabled@yahoo.com for further information.